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I can’t believe that another year has passed, 2016 wasn’t an easy one, but we are ready and open for 2017 and all the kindness and positivity that it will hold (and that we will focus on!)

This year held many new milestones- some fun amazing one’s with Lauren’s little sister and others that were very hard and difficult, missing our Lauren and my big brother.

On January 8th Lauren will be celebrating her 6th birthday among her angel friends. Here on earth we wanted to do something very special to celebrate her memory.

We are proud to announce we are once again hosting a Random Act of Kindness Campaign for the entire month of January. We would love for you to participate in this campaign that is sure to bring a little fun and warmth to the cold month of January.

A Random Act of Kindness is a selfless act performed by a person that can bring help, kindness or cheer to another individual. You don’t have to spend any money to perform an act of kindness, and what you do is up to you!

If you would like to participate in our campaign throughout the month of January, we would encourage you to the following

1 – Print out or use the campaign tags or image included below

2 – Prepare your random act of Kindness

3 – Remember to include the tag or image, consider leaving extra’s behind for the next person to use to help keep the movement spreading.

4 – Take a photo, post an image or your story to social media using hashtag #lifewithlolRAK

5 – Share the campaign on your social media!

We will share some of our favourites at the end of the month!

Click below to save the printable tags.

Please share this post on all of your social media to help make this campaign soar!

I can’t believe that January is already here, that we said goodbye to 2015 and are greeting our first year without our Lauren.

The milestones of new holidays and experiences without Lauren have been tough but we face them the best that we can and try to honour her memory to the fullest along the way.

On January 8th Lauren will be celebrating her 5th birthday among her angel friends. Here on earth we wanted to do something very special to celebrate her memory.

I would like to proudly announce that we are hosting a Random Act of Kindness Campaign for the entire month of January. We would love for you to participate in this fun campaign that is sure to bring a little fun and warmth to the cold month of January.

A Random Act of Kindness is a selfless act performed by a person that can bring help, kindness or cheer to another individual. You don’t have to spend any money to perform an act of kindness, and what you do is up to you!

If you would like to participate in our campaign throughout the month of January, we would encourage you to the following

1 – Print out or use the campaign tags or image included below

2 – Prepare your random act of Kindness

3 – Remember to include the tag or image, consider leaving extra’s behind for the next person to use to help keep the movement spreading.

4 – Take a photo, post an image or your story to social media using hashtag #lifewithlolRAK

5 – Share the campaign on your social media!

We will share some of our favourites at the end of the month!

Click below to save the PDF of printable tags.

Please share this post on all of your social media to help make this campaign soar!

Every breath taken burned my lungs, my chest felt heavy and sore. The air was cool against my skin, leaves cascaded slowly from the trees above landing gently on the dark asphalt. The rain was starting up again, falling rhythmically against the ground. In my struggle, I felt at peace. I could feel her by my side.

Today marked the first day of my training for the Princess Marathon at Disney World coming up in February 2016. It was also my first day back to running since getting pregnant last fall. Needless to say I have a long way to go, today I was only able to complete 2 kilometres before my legs felt like wooden stilts. Struggle aside – walking home with stiff legs and congested lungs I found myself feeling taller, I felt stronger.

There’s something about running, I can feel an energy connecting me to nature. I feel Lauren in that energy – it’s just Lauren and I running together.

A week before Lauren left us we had gone to Disney World together. Our friends had given her a beautiful Rapunzel dress and shoes, she looked breathtaking (she always did). For the Disney run I will be running for her in a Rapunzel inspired running outfit (still to be created). Zoe (wearing a Rapunzel dress of her own!) and Stephen will be there to cheer me on.

I will be joining my good friend Nichole on this run – she will also be running in memory of her daughter. Nichole lost her beautiful girl Emma to Krabbe disease a couple of years before Lauren. We like to imagine that our girls are playing together in heaven and have become wonderful friends.

It is my intention and hope that I can share my progress and feelings in preparation for my February run – it is sure to be an emotional journey. I hope that you will join me and encourage me along.

September is Leukodystrophy Awareness month. Leukodystrophy is a disease that affects the white matter in the brain, it helps to send signals across the brain and is essential to gross motor function.

Our daughter Lauren had Krabbe disease which is a form of Leukodystrophy, the average age of her disease is said to be 13 months. Lauren lived to be 4 years old and 3 months.

Born appearing healthy, Lauren reached healthy milestones until about 8 months of age. By 9 months it had become obvious that something was wrong when our princess couldn’t sit up well on her own anymore.

By 10 months her limbs had become stiff, her head heavy to support and the use of her left side almost gone.

By 11 Months (her first Christmas) she needed daily painkillers and had begun tube feeding by her nose. She still smiled and laughed but both were a little weaker each day.

At 12 Months Lauren had a gtube placed that would help tremendously with her feeds.

By 16 months Lauren’s vision had become poor, but would come and go for the next few months.

I still remember the overwhelming feelings, the helplessness of watching my child lose what felt like everything at the time.

Officially diagnosed with Krabbe at 11 months of age, I watched her deteriorate significantly within the next 5 months.

Once we were able to shake off a little bit of the fog and hopelessness of our situation, Stephen and I took action in making Lauren’s life as joyful as possible. Though her abilities limited her, she still experienced the world and we wanted to make our time with her count.

We lost Lauren on April 13 2015

Did you know that all of the above might have been avoidable if newborn screening had been available to us. Through newborn screening, Lauren would have been a good candidate for a stem cell transplant that could have stopped the disease in its tracks before much of the damage had been done. If only…

#WhiteMatterMatters

Check out Judson’s Legacy’s website to learn more about the #WhiteMatterMatters campaign

Lauren Olivia passed peacefully surrounded by family on Monday afternoon at 3pm.

Both the visitation and the funeral are open to anyone who would like to attend. In memory of Lauren it would be nice (of course not required) if you could wear something lavender, pink or purple, even if it’s only an accessory.

Visitation will be Friday April 24 from 2-4pm and 6-9pm at Collins Clarke Funeral home (222 Autoroute 20, Pointe-Claire, QC H9S 3X6)

Lauren’s funeral will be held on Saturday April 25th at 11:30am at St Edmund of Canterbury Church (105 BEACONSFIELD BOUL, Beaconsfield, QC).

If you would like to send something In lieu of flowers you may send us a financial gift through Paypal, the funds will go to help with final expenses and to set up the Lauren Olivia Memorial Fund – helping support other families who are also struggling with a sick child and fund Leukodystrophy research.

This has been the most difficult week of our lives, our daughter was our heart and soul, the sense of loneliness is incredible. Everyone’s kind words, posts and support has helped to comfort us. I can’t describe the feeling I had the morning after our daughters passing when I opened up Facebook to see Lauren had taken over my entire newsfeed. So many had shared stories and pictures about our princess – our hearts were warmed. On Lauren’s page there are still countless messages waiting for us – I can’t help but feel blessed and overwhelmingly touched by the impact our baby girl has had on others and their lives.

Buddy hasn’t been quite the same since Lauren is gone, he is constantly searching the house for his best friend and sister. I used to cry when Lauren was alive at moments when her disease overwhelmed me, Buddy had always seemed used to and indifferent of those moments, now when I cry I find him jumping into my lap trying to kiss me to ease the pain. It’s truly remarkable.

xox

Daddy and Baby reunited!

Lauren with Grandpa

Our Angel on Earth – Thanks Melanie!

Super Friends Club!

Lauren and Mommy – enjoying our first plane trip together

December 2011 – Image Courtesy of melaniewand.com

Jenn Munro took this picture of Lauren in the beginning of January, notice Lauren’s perfect belly 🙂

A little smile to let Mommy and Daddy that she is ok

Lauren and Cookie Monster – This is as close as we got to a smile this week

Lauren Loving her new car seat, and saying thank you to everyone for helping mommy and daddy to buy it!

Lauren in her fancy new swimsuit – Which way to the pool?

Loving the water!

More Bunnies! Julia and James join Lauren for a cute Easter pic

Lauren in her Kimba, Notice the beautiful Photo’s by Jenn Munro in the background.

Lauren all ready for a swim

Lauren’s new hand splints – doesn’t she look like she’s getting a manicure?

Kenan and Lauren hanging out at the Hunter J Kelly research institute

The three runners pose with their medals! Way to go guys! Stephen, Dulce and Dustin

Lauren was the Irish Queen in our house on St Patricks Day

One of my most favourite pictures – Lauren smiling in the morning, this photo was taken only 4 days ago!

Our beautiful Lauren left us for heaven yesterday afternoon (April 13, 2015) at 3:00pm. We were so lucky and privileged to be her parents. I am so proud of her strength and spirit. Thank you all for your wonderful prayers and thoughts. Her life was a miracle, we thought two years old would be something but she lived over four, everyday a wonderful memory

Kate McKenna of CBC Montreal News swung by Lauren’s party on Sunday. She interviewed Stephen and I about the event – if you would like to check it out click on the link below! You will have to fast forward to minute 8:00 of the broadcast 🙂